My MS, My Machines, and an unlikely ménage à trois
by Jenny Ferguson
This is the fun part of my MS journey since diagnosis, over 20 years ago, told through my mobility machines. The variety of insights have often surprised, if not always amused me. In retrospect, I realise that as my MS symptoms have progressed, so has what I’ve been searching for in my mobility machines. And this is my sojourn. Looking back, in the first ten years I was much less concerned by physical challenges. It was almost all about emotions unleashed by the seismic scale eruption and fall-out and slowly coming to terms with, and eventually accepting the reality of what MS was to me, myself, my place , me, ME, ME. My first mobility aid wasn’t in fact a machine, but the power of others. I started shamelessly ‘harvesting’ strong men’s strides, hanging onto a passing arm in order to engage in synchronised walking. Power and balance were the first casualties of the MS onslaught. To compensate, I felt these life forces had to be parasitically leached from whoever was willing and able to share these most precious of commodities. However, there was almost always a period of ‘training’. My ‘hosts’, or was it in reality victims? Whichever, they would always walk faster than me. To harness the power in their stride, limpet like, I’d have to hang off their arm. But doing that meant finding the means to siphon off some of the host’s strength and adapting to the shape of their arm. To produce good results, this parasitic process had to allow both me, the parasite, and my host, to coexist and hopefully for us both to ‘prosper’. It became a finely-honed skill, not to say a very exact science. However, to maintain the semblance of a ‘normal’ life, to make up for what had been lost, I needed to go beyond what I could leach from a human ‘host’. Harnessing the energy of my big, power-packed dog, Betty, also became fair game. Having always been a dog owner, I know that dog = walks; as many as they can get! So, I instinctively knew that Betty possessed near on limitless syphon potential. However, trying to walk arm in arm, or leg in arm with her would have created more problems than the MS! The solution to my problem was the POWERTRYKE - a tricycle which can be pedalled normally, or it’s battery powered motor can do some, or all the legwork. But with the aid of ropes, tethered to the steering shaft, abracadabra, I could also harness Betty and therefore add DOGPOWER to the mix. So, my unlikely ménage à trois was born!
Picture and, if you can, feel the exhilaration for both rider and energetic dog as we bound off to the park, complete with basket on the back. This is stocked with essentials for the expedition; water for dog and owner, pooper scooper, bags for the poo and mobile phone. Safety, sanity and speed dictate we stick to quiet side roads, as main roads proffer potentially disastrous distractions to dog and other vehicle drivers alike. I learned that the hard way. One day I was on a main road, which was already proving a bit testing, when, to get to the greengrocers I decided to hang a right. Right in front of an on-coming bus. All traffic came to a screeching halt. Looks of stupefaction quickly gave way to anger. Luckily, Betty was just about the only one to keep her cool and we were out of there quicker than you can say ‘poop scooped’.
Even if we’re not causing traffic mayhem, we always occasion a lot more than the odd glance, or stare. I found the type of reactions and comments we got quickly became typecast to the kind of person delivering them. Young children and parents are transfixed, as are teenagers. Older men nod wisely and mutter something like 'one dog power ' under their breath. Middle-aged women are mostly oblivious. Doubtless lost in thought on much more pressing issues, such as having to cope, simultaneously, with both adolescent kids and ageing parent issues. But when not lost in thought, this is by far the most censorious group. At best, I get a ‘tut’ of the head. At worst a sad, shake of the head.
The worst are the dog defenders and the anti-lazy brigade. They never hesitate to give voice, often at fog horn register, to what they see as my outrageous behaviour. Occasionally, I stop to try and enlighten them to the fact that this a marriage made in heaven. On the one hand (or paw?), a great way to exercise a big dog with such power and energy levels that I’m constantly applying the brake, lest she run and run and create a veritable slipstream. And on another paw, it’s a truly life enriching experience for me. Without dog power, my MS would deny me such ordinary, but immensely pleasurable activities such as going for a walk. After all, what are huskies and sleds about? Sadly, such exchanges are all but an exercise in futility. This, despite the fact that Betty is standing right in front of them, tail wagging furiously, so barkingly obviously proving she’s having a whale of a time.
My very best piece of kit is a SEGWAY. This is coolest of the cool. Anybody who knows me well, will, I hope, confirm I’m not at all narcissistic. But it was great to see heads turn my way, with a mix of interest and often, I suspect, envy. Particularly young men. No, it’s anything but narcissism. Rather, it was the fact nobody had the slightest inkling I was all but wheelchair bound.
This wondrous machine is powerful, silky smooth and offers a certain frisson of danger. Critically, for somebody with all the stability and balance of blade of grass in a gale, it has the ability to rebalance itself a hundred times a second. Plenty enough for even the wobbliest wobbler, like me. However, it did feel somewhat bizarre in the way it suddenly, and almost miraculously gave me back a rock steady gait. But, with power added. Result! A sense of confidence and well-being, whilst in motion, that I hadn’t enjoyed for years and years. The Segway did take a bit of getting used to, and of course demanded the ability to stand. Its likes and dislikes became second nature to me, but woe betide you lest you forget. It has tremendous torque, which will throw you off, if provoked, like a bucking bronco.
The sharp-eyed reader will have noticed that I’ve been talking about my Segway experiences using a mix of present and past tenses. The reason being that I was indeed ‘bucked’. Foolishly, I tried to get on it late one night, in order to put it back in the garage, after returning from a dinner out. I suffered a broken leg for my pains and that put paid to my Segway days. One consequence of the accident was that it also fractured my spirits, albeit temporarily. After I came out of hospital, I was forced to ‘descend’ into a wheelchair. In any gathering where people were standing up, I always found myself being talked over, talked of, talked about, but dispiritingly rarely, if ever, actually talked to. Unwittingly I’m sure, people behaved as though I’d lost all my mental faculties in a ‘does she take sugar’ kind of way. No need to shed too many tears at my plight, however, because leg mended, my wheelchair was consigned to the scrapheap of history and enter the VIPER. Oh yes, that’s the real name and it lives up to what’s written on the tin. But at this stage I should own up to the fact I was, and still am, a person with a little bit of ATTITUDE. All my adult life I’ve secretly hankered after a powerful motorbike. But with kids, work as an (ultra-respectable) midwife, I never got round to it. I guess subconsciously the Viper is, in some warped way, the fulfilment of that dream. It is gives me plenty of buzz, but none of the terror potential of the Segway.
My Viper lends itself to all things ironic. Visualise a three wheeled, Easy Rider style powered wheel chair, with its exaggerated name brazened on its handle bar shaft. To take the Easy Rider theme still further and the need to dress the part: strictly bikey, please. Its long battery life and power makes it fast and there’s no limiter on this little baby . But alas, I'm not talking Harley Davison coolness and speed. All things, after all, are relative. Hopefully, though the real McCoy is waiting for me in an afterlife.
Lest you think I’m a totally delusional dreamer, as a long-time midwife I do have a practical side. Enter my FREERIDER scooter. It has none of the style, or head turning power of the Viper, or Segway. Nor does it attract any of the brickbats of my Betty propelled Powertryke. But it does offer comfort and a way of easily navigating the interior of most shops. So, my shopping is no longer limited to the Internet. Buying daily food from the market is a sheer joy. Although the Freerider may lack panache, it’s an article of both self-esteem driven faith, and practicality, that I dress for the part. It needs to be warm, which means, voluminous. Imagine, if you will, a fusion of Anna Karenina and bag lady. Oh, and don't forget the Bardot sunglasses. This brings me to the lithium battery powered LUGGIE. A little, aircraft compatible, scooter. Lest you think me a total screwball, by compatibility I don’t mean for charging up the aisles of the plane, although come to think of it, why not give that a go on a super jumbo? No. It packs up neatly, so is easily stowed away aboard an aeroplane. And the battery doesn’t worry airlines. But beware of potential damage which can be inflicted on it when it's out of your sight. It's a delicate baby, expensive to repair and not made in big enough numbers to warrant affordable and accessible parts (like the hundreds of lovely children delivered, I suppose!). I speak from bitter experience here. Of course, none of my fleet of mobility machines and contraptions can replace a pair of legs which work. But as well as allowing me some semblance of a normal life outside home (well, sort of), they are a near endless source of ‘interest’ for me and whomever happens to be around me. Drivers are mostly courteous and long suffering as I indulge myself. And last but certainly not least, having a tolerant husband is priceless.
Jenny Ferguson (Secondary Progressive MS)